the girl with the strange eyes

I've been meaning to update the blog all week; you'd think that with school vacation week, I would have had more time for writing. I guess I did, but I used it to try to meet two looming professional writing deadlines, an article and a syllabus both due by the end of this week.

We did enjoy a good vacation week. I felt, for once, that it was a good mix of getting "things" done and being together as a family. We had nowhere to go, no promises of visits to fulfill, and I was grateful for that. Grateful just to stay at home in West Bridgewater, to have time to work on house projects (our basement refinishing project is still ongoing), to take walks through our neighborhood, to welcome Jackson's baseball season (a town parade and opening ceremony!), to write, to help the boys to get together for youth group (Orilus) and a new friend (Jackson), to do a day-long appointment at the Down syndrome clinic in Boston (together--so wonderful to have Jason with me on such long days at the hospital!). I worked two mornings, too, and so the week passed with beautiful weather, a lot of driveway basketball, and family YMCA workouts.

Moriah, it turns out, came down with a virus on Thursday. She's been fighting diarrhea since, and last night, ended up in two ERs--one at South Shore, and then here at Children's, where we were admitted last night. But now that the diagnosis is certainly viral, they're most likely sending us home this afternoon, on Pedialite and with a new diaper protocol for her terrible red bum. Poor little girl. She's had such interrupted sleep since our ER adventures began yesterday evening, and now, finally, is taking a deep nap while I try to keep the nurses at bay. And have a few moments to read, and to write.

What I should be doing is working on an article I'm writing for publication; what I've been doing instead is starting Henri Nouwen's The Road to Daybreak (thanks for the loan, Val!). Many of you know Nouwen as the Yale and Harvard prof who left his life of academia to live among a community of adults with special needs. He writes there of the two worlds--the academic, and the special needs--and I am resonating with this entirely. Wednesday I sat in the UMass library for six hours, writing and writing and loving every minute of it. Thursday I sat in appointment after apponitment at the Down syndrome clinic, explaining again that no, I don't have any mental handicaps, and yes, I have graduated high school. And the two worlds are so contrasted. In one, I'm revered for my writing and my critical mind; in the other, my ability to help Moriah learn to sit and teaching her to eat so well.

Yesterday as we were checking into the ER at South Shore Hospital, Moriah had a big mess (surprise, surprise). I brought her to the ladies' room to change her. As I was settling her back into her stroller there, a woman about my age came in with a tow-headed little boy of about 3 years old. He walked right up to Moriah. "Do you see the baby?" I asked him. "Yes," he said solemnly. "Isn't she cute?" I asked him. "Her face is strange," he responded. I wanted to laugh--his sincerity and honesty so charming, even as I was processing how even such a little guy can see Moriah's diagnosis. "What do you mean?" I asked him. "Her eyes are strange," he said. "They're shaped funny." At this point, of course, his mother is hushing him, looking at me uber-apologetically and pleading, "I'm so, so sorry." I smiled warmly at her, assured her it was fine, and said to her son, "I'm so glad you noticed my baby. She can see you, too, and I think she's happy you looked at her."

The mother apologized a million more times, and as I left the bathroom and the two headed into a stall, I heard her say to the boy, "You shouldn't talk about people's eyes like that." "Why not?" I heard the boy ask. And then the door shut, and I didn't hear her response.

But it made me wonder. "Why not?" What is it about us that would rather pretend that we are all the same, when we aren't? That disabilities do not exist, when they do? That grieving a mother might also be bringing her great joy, and a new laugh, all at once?

Nouwen writes of his first experiences in the special needs community. His words today remind me of the little boy: "[Handicapped people] proclaim loudly the preciousness of life and encourage us to face reality with open eyes and outstretched hands. [They invite us] to places of celebration in which the certainty of the present is always much more important than the uncertainty of the future. [They] are witnesses to the paradox that the most unlikely people are chosen by God to make us see."

Make us see. Moriah, I know, is making me see in new ways. When she is seen, and in some encouters, when she is seen for WHO she is and not just what she "has," there is great potential there for me to understand exactly how God sees me. For who I am, and not what I have. The girl with the strange eyes. A beautiful tradeoff, if it means being seen more fully, and loved more dearly.

at Grammy's request

Dear Great-Grammy, Mommy tells me you were asking for more videos of me. We took some new ones today...me by myself, me with Jackson, and me with Mom. I hope you'll hear my laugh in the video with Mom. I laugh a lot now! I hope I get to see you this week! Love you, Moriah

we are not consumed

Thank you, thank you, for your posts and emails and prayers last week (and Debby, I didn't think you insuated my culpability at all...wouldn't have even crossed my mind!). Moriah is MUCH better...we were able to bring her home on Thursday afternoon and treat her with antibiotic here. She's mostly smiles and laughs today, back to her sunny self, her cough sounding better and better, too.

Weeks ago I had signed up to attend our church's women's retreat, and of course, of course, it began Friday. Of course. Because by Friday, I pretty much didn't want to go anywhere except to my bed for a really long nap.

But when your husband tells you you're going, you're going. Or at least, when MY husband actually tells me to do something, I know better than to argue...the reason, after all, I married him was mostly because he is one of the few people I ever met who would actually stand UP to me. And thankfully, after nearly 13 years of marriage, he's still doing just that. So he basically gave me a kick off the couch and off I went Friday afternoon. Though my sister-in-law was unable to come, I was graciously invited to carpool with a friend from church, who turned out to be my roommate for the weekend.

So there's a lot I could say about the weekend. One woman commented to me this weekend that I'm a "professional retreat-er." That seemed hilarious to me, until I thought about it...well, yes, I have done a lot of retreats. Silent retreats. Spiritual formation retreats. Retreats with a spiritual director. Retreats with labrynths. With meditation. With prayer rooms and journals and Scripture. And I do try to schedule a retreat for myself--once every 3 or 4 months, to be alone, to pray, to read, to take myself to lunch, and to connect with God again. So...this retreat was planned (or so it seemed to me) more for social retreating, which was a bit of a surprise for me (was expecting more in the way of spiritual practice), but a lovely gift. I was able to make some new friends, deepen some new relationships with some women at my church, and feel that I'm not, after all, going to be alone here in West Bridgewater (as if any of YOU, or as if God for that matter, ever had any doubt). (And here I must give a shout out to my Fellowship blog readers...thank you for a really fun and meaningful time this weekend!).

I did make time yesterday evening, too, for journaling and prayer and a swim and more journaling. And mostly, for a mediation on Lamentations 3, in which we find we are not consumed, because God loves us, even though we are quite depressed, or downcast, or suffering. And I found, too, that we must often talk to our souls, remind ourselves, tell ourselves again, the truth of the lives we lead...that sadness is not the whole story. That Down syndrome is not the entirety of who our children are. So I spent a lot of time this weekend re-telling the stories of my life, and re-framing them in hope and love. And I feel better and more refreshed.

My neighbor's arrived to sit and chat...love this neighborhood, and the opportunities for friendship here. Thanks again for prayers, friends. Love and light to you all...

hospital again

That's right, friends. Moriah's in the hospital again.

Moriah and I spent our Easter Sunday in the ER--she woke up that morning with a really high fever and a bad cough. Diagnosis: virus. Monday we visited the doctor. Diagnosis: virus. Tuesday we visited the doctor again. Diagnosis: croup and an ear infection. Yesterday we asked and went for a chest X-ray. Diagnosis: bad pneumonia in the right lung. We were sent immediately to be admitted at South Shore Hospital so she could be monitored and treated with IV antibiotics.

So here we are. Yesterday was one of Moriah's worst days...fussing and crying for hours, and unable to calm herself or get herself to sleep. So unlike her. I grew frustrated with her, with her nurse, with the situation...it's times like these when acceptance of this life (kids with DS tend to have more sickness, especially respiratory ones) seems really far fetched. And pretty much unattainable.

I finally fell asleep a couple hours ago with a hurting chest (the stress, I know), saying to myself, "My life agrees with me. My life agrees with me" (a mantra a colleague taught me a couple years ago). Except I pretty much feel like that's a lie, because once again I am kicking and screaming against everything DS might mean for Moriah, and yes, for me, and for us.

So we need prayers for Moriah and her healing especially. And her comfort--the poor, fussy girl. So awful to see her so sad! But also, prayers for trust again, for surrender again. Sometimes, depression and discouragement seem like twin house guests who visit too awfully frequently...am trying to laugh at them, and listen to what they have to teach me.

Moriah is fussing again (thanks to our night nurse, who woke us both by turning ON the overhead light...ugh!) and she's not getting herself back to sleep at all. Prayers, friends! We need them.

a thought on the road to acceptance...

Guest House
by Rumi

This being human is a guest house
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.